My experience with long-COVID

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A thread about my experience with long-COVID for anyone who might find it helpful or interesting. Disclaimer: this is not medical advice! 💊👇

I got COVID in March of 2020 ("Covid Classic"). My symptoms were mild: body ache, diarrhea, low fever, and a little difficulty breathing. I was better within 10 days. I had no known preexisting conditions apart from mild asthma.

My other symptoms evolved over the next 2 - 8 months: - migraines - diverticulitis - chest pain - palpitations - high blood pressure - fibromyalgia - temperature fluctuations - food sensitivities - nausea - neuropathy - hair loss

I've seen a cardiologist, gastroenterologist, neurologist, rheumatologist, allergist, endocrinologist, nutritionist, integrative medicine doctor, and functional medicine doctor. I've enrolled in two long-COVID clinics. My symptoms have sent me to the ER 5 times.

I've had done X-Rays, CT scans, MRIs, allergy panels, sonograms, a stress test, a 24-hour heart monitor, and 100+ vials of blood tested (not an exaggeration). I've gone under general anesthesia twice: once for an endoscopy and again for surgery as a result of diverticulitis.

Keep in mind that, throughout all this, I was in 6 - 7/10 pain -- for 18 months. And what did these tests find? Nothing... except for high blood pressure. My doctors would happily report that my tests were otherwise "perfect" as I stood in front of them a ghost.

Trying to solve one's own medical mystery is like playing detective while being pursued by the killer. It's like trying to solve a crime in an active crime scene.

It's ironic that the very thing we rely on to get us out of a crisis (our brain) belongs to the very thing under attack (our body). It's about as straightforward as trying to pull oneself out of quicksand.

Pain was only the half of it. Any physical pain I had experienced up until 2020 was temporary and came with the promise of its eventual absence. Here, there was no such promise. The other half was claustrophobia.

2 years later, I'm doing much better -- though still only at about 80%. Even so, what symptoms I do have pale in comparison to the constant chronic pain that rocked my world in 2020 - 2021. So what helped?

🍎 A low-histamine, low-inflammation diet. This meant no gluten, dairy, alcohol, sugar, caffeine, and certain high-histamine ingredients like mushrooms and spinach. As a foodie, this was demoralizing, but a small price to pay for symptom relief.

💊 Beta blockers. These got my blood pressure and palpitations under control and helped curb my sudden onset anxiety and panic attacks as a result of my symptoms.

💊 LDN, or Low-Dose Naltrexone. In its full dose, Naltrexone is used to treat those recovering from opioid addiction. In a smaller dose, it's been shown to treat immune system-related issues like lyme, CFS, and fibromyalgia.

🩺 Working with a functional medicine doctor. When traditional medicine failed to find anything wrong with me, it was a functional medicine doctor that finally found mold in my body and - through detox - set me on a path toward improvement.

🧘 DNRS, or the Dynamic Neural Rehabilitation System. It's thought that part of immune system disfunction be a type of brain injury called a limbic system impairment. DRNS exercises have not only lessened my symptoms, but made me a happier person overall.

🍄 Mold detox. We found a huge amount of mold in my system, which had probably been laying dormant for years. The combination of mold, COVID, and antibiotics as a result of diverticulitis was more than likely the "perfect storm" that tipped my immune system over the edge.

♨️ Infrared saunas. Sweating releases endorphins, which reduces inflammation. Infrared saunas allow you to sweat buckets in a way that accommodates for long-COVID-induced exercise intolerance.

For anyone suffering, I'm not recommending these treatments specifically. I do, on the other hand, recommend some self-experimentation... within reason. (One clinic prescribed me, and I did not take, Ivermectin.)

I now take a combined 20+ medications and supplements per day. While I've been making slow progress, it's as of yet unclear whether or not I'll ever fully recover or if this is more or less my new normal.

Despite all this, my experience has been a very privileged one: in 2021, with good insurance, I nonetheless went out of pocket ~$30,000 in medical expenses.

I've been reluctant to write about this specifically because I don't want to be a poster child for long-COVID, thereby attracting its deniers. I have nothing to defend; only my own experience to relate.

Long-COVID may very well be a convenient name for 200+ issues, some of which are the result of pre-existing conditions and others of which are the more common result of recovering from a virus. That doesn't make it any less pernicious. David Berkowitz is still Son of Sam.

These days, I'm one of my few remaining friends to still wear masks indoors. I don't dine indoors. I generally avoid large groups of untested people. I do, however, see small groups of friends indoors, dine outdoors, and shoot with 50+ tested people on a regular basis.

The COVID debate is now "life is too short this bullshit" vs. "this bullshit will shorten your life." Both of those arguments have merit. How you weigh them is up to you. ✌️

Heartfelt thanks to the Dropout team, my darling partner Elaine, my immediate family, my dear friend @rejectedjokes (who was at one point checking on me every single day), and everyone else who has held my hand through the most difficult chapter of my life. ❤️

Recommended reading: 📘 The Invisible Kingdom by @meghanor 📘 The Deep Places by @DouthatNYT 📘 The Way Out by Alan Gordon and Alon Ziv